New Autism Numbers, Ways To Advocate

Headlines soared yesterday with the CDC report that the number of children with autism diagnoses had increased by 30% in the past 2 years. “Reality is there are many children who are having serious struggles because they can’t communicate well and have a hard time being with people,” Dr Chuck Cowan clearly stated to me this morning. Like a bell on a quiet night, I feel parents need to hear this most: we just want to connect children with the resources they need to thrive at home and at school and throughout their lives. Doesn’t matter what we call it, we want children of all backgrounds, of all resources, and all opportunity to be afforded the chance for a connected, lovely life. As a realist of course, I do know that numbers matter because it changes how we screen, how we advocate for children, how we move funds and resources, and how we ensure children get what we need. Numbers help activate.

The new numbers don’t mean anything is different today than it was 2 years ago really. Instead:

The “new” number published this week finds an estimated 1 out of every 68 children here in the US has an autism diagnosis at age 8. Like before, likelihood for autism is more common if you have a family history of autism and 5 times more common for boys compared to girls. Children who aren’t white don’t get identified as having autism as often and we know from numerous studies non-white children don’t get the resources they need like their caucasian counterparts. That’s not new, either. Also, there may be environmental factors at play although data on determining true environmental causes of autism, versus associations, is still unfolding. Researchers are trying to sort out the role for chemical exposures, e.g. how close you live to highways, and what your children eats in predisposing a child to challenges with communication.

I spoke to Dr. Chuck Cowan, the medical director of the Autism Center here at Seattle Children’s, in a fascinating and very educational call. In a nutshell, he said, “There is nothing new in this report” and went on to explain to me that in fact we may still have not reached the true prevalence of autism with yesterday’s report that 1 in 68 children have autism in the United States. He points to the Korean study where researchers looked an entire population of people, and examined all children. In that study they found that >2% of children had autism (greater than 1 in 50). He illuminated that when identifying children with autism that as the resources and education for identifying children who have trouble communicating & being with people improve, we’ll just find more people who need help. He even mentions that there are variations from place to place in terms of how many children have autism. Although there is some research coming out about the role of environment and toxins, there is also just relevance into how hard doctors and communities are looking for the children who need help and meet diagnostic requirements for autism. “People looking harder find more children,” Cowan said, “New Jersey has a 3 times higher prevalence than Alabama.”

Cowan also clearly knows that these new numbers show we’re getting smarter about finding children who need more support.

Every successive study uses better resources to look more carefully [for children with autism]. When you do that you will find more children, hence the number increasing every couple years.

Clearly we need to focus on caring less about labels and more about connecting children with early interventions they need. Truth be told, wait lists for specialized autism centers are around 6-12 months all over this country. Cowan advises that pediatricians and parents, “need to identify problems and deficits that children have and focus on getting them appropriate interventions for each deficit. If a child is under age 3, that’s through birth to three programs, after age 3 that is through the schools.” That’s the real good work we can all do.

What Parents Can Do If Worried About Autism:

More than anything, bring up any concerns, anxieties, or worries you have about your child’s communication, ability to connect, or development at any age with the pediatrician. Your opinion is of utmost importance. If you don’t feel heard, book another visit or seek a second opinion.

If you ever worry about your child’s ability to communicate, confirm your child has normal hearing and normal vision.

If you have a family history of autism, let your pediatrician know this. Work hard with those who help you care for your child to continue to observe and support your child’s development at every stage.

If your child is referred for a birth to three visit, a developmental screen, or sent for a speech, occupational, or physical therapy visit — don’t wait. The earlier you get your child support, the earlier you will see wonderful improvements.

As a parent you must know that your opinion and concerns about development are very relevant and essential. Work hard to ensure those helping you care for your child hear what you have to say. Dr Cowan noted that the new numbers urge a “plea for recognition that this is a public health issue and needs more resources.” Our voices as parents and pediatricians about what is going on, while identifying children who need our help, will only improve children’s options.

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